The good news, the not-so-good news, and the plan!

A sheet of paper with the word PLAN written on top

Yesterday was horrendous to get through. My pain was almost always an 8 to 9 out of 10. It was SO bad I reminded me of my periods during my 20s. HORRENDOUS. In a ball, crying, and couldn’t find any relief in any position. I barely got five hours of sleep last night, but I’m at work today with my pain down in the 4-level. I can do this.

I met with my gyno/surgeon yesterday to discuss my recent ultrasound: my left cyst is shrinking! It’s down from a 2.3cm to a 1.2cm. Both he and the radiologist feel it’s a simple cyst that is resolving itself. No more need for another ultrasound in two months! YAY!

My explosive pain on Day One of my period yesterday was met with options. He cannot prescribe Tramadol (which is the only thing that works for me when Naproxen doesn’t) because it’s an opioid. So, back to those options:

  • Lupron Depot: no
  • Orilissa: no
  • Birth control pills: no
  • IUD: no
  • Depo Provera: no
  • Surgery: maybe
  • Acupuncture: I can’t afford it
  • Pelvic floor therapy: I can’t afford it
  • Pain Management doctor: yes

So, the plan: Get the referral to a pain management doctor (he recommended one and I already emailed my PCP for the referral) and see how that goes. Head on back to Dr. Kurtulus in February to discuss how things are going.

If still desired at that time, discuss another excision surgery and a hysterectomy to remove at least the cervix and uterus (they still suspect I have Adenomyosis), leave both ovaries if both can remain; remove one if one appears it needs to be removed. And excise any Endometriosis he may find, as well as adhesions an restore anatomy to its rightful place.

I was in so much pain in the appointment that I just cried. I felt like such a boob.

Today’s pain levels are much more manageable. And I just received word that this Friday’s colonoscopy is approved by my insurance, so I’m glad I didn’t take any NSAIDs yesterday.

Having a plan, even one that is so far in advance, helps with the mental aspects of coping. And I’m grateful for even that much. And thank you to everyone for your support yesterday!

PS – I love my doctor and his staff. Even though I wasn’t in my best mood and form, they were all so super supportive and positive and loving.

Share Your Story: Patricia

Smiling woman with dark hair

Patricia was only 16 years old when she was diagnosed with Endometriosis.  Now 42, she lives in Montreal, and tells her tale now.  It includes a progressively worsening diagnosis, a full hysterectomy, ongoing medical treatment, and 32 surgeries!  Despite her medical efforts and treatment, she continues to suffer with the illness.

Patricia’s Journey: I was diagnosed with endometriosis at the age of 16. It wasn’t too bad at that point, but between the age of 16 to 21 it went to stage 4. So it was decided at the age of 21 to have a full hysterectomy, thinking it would be a cure. I also had tried all the medications that were available at the time to treat it. Nothing worked not even the full hysterectomy.

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Share Your Story: Katrina

African American woman leaning up against a pillar

Living in Barbados, Katrina was 29 when she was diagnosed with Endometriosis.  Today she’s 34 years old and shares her Journey with us.  She truly is a Warrior!

Katrina’s Journey: Life started out normal like any teenager but it soon came to an abrupt hault when I started to mature a bit more then the pains associated with my period was terrifying on the onset of my menstruation. As I grew older the pain got worse at age I was hospitalized for a low blood count due to the amount of blood I had lost in that one cycle it was terrifying.

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Share Your Story : MB

Text that reads, "I'm not sure what to do and I am terrified of having to start having surgeries again."

MB was 20 when she was diagnosed.  Now 29 and living in Alabama…her pain is back and she’s not sure how to move forward.

MB’s Journey: I had a baby when I was 18. I got married at 19 and then 6 months later started having bad pains so I saw the gynecologist. She did an ultrasound and test and it was a holiday weekend. They called the end of that day saying there was a mass in my uterus and I need to see the doctor after the holiday. That’s it.

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Share Your Story: April

Smiling woman with brunette hair and brown eyes wearing shirt that reads "Hello there."

April was diagnosed with Endometriosis when she was 30, but suffered with the pain for over 18 years before she knew what it was.  Like so many of us…Now 37, she lives in Ardmore, Canada and shares her story with us today.

April’s Journey: I was born in Georgetown Ontario in 1979, my parents and I moved to Alberta when I was 2 years old. I was a shy quiet kid growing up so and I still am quiet and somewhat shy at times lol, so it amazes me I am standing here today telling you my story.

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Share Your Story : Tara

Man and woman standing next to a christmas tree

Tara Langdale-Schmidt lives in Florida, and was diagnosed with Endometriosis when she was 11 years old! She also suffers from Vulvodynia.  Now 32, Tara invented a treatment that is helping women who suffer from pelvic pain all over the world. Today she shares her story and struggles, but also shares her victories.

Tara’s Journey: It started when I was 11 with my first surgery. Doctors did not know what was causing my abdomen pain so they the scheduled exploratory surgery. They found a huge cyst which had cut off the blood supply to ovary which killed it. They removed that ovary and tube. This was the first of many surgeries for cysts and endometriosis over the next 20 years.

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Share Your Story : Melinda

Guyanese woman in a blue shirt and necklace

Melinda lives in Guyana in South America and was 35-years-old when she was diagnosed with Endometriosis.  Now 40, she has started an Endometriosis Support Group in her country.  May she bring the government, the women, and the medical professionals together to raise Endo awareness and improve healthcare for the Guyanese citizens!

Melinda’s Journey: 

🌅 Let me begin by thanking Lisa Drayton from Bloomin’ Uterus for giving me that little nudge I needed to start this Endo conversation in Guyana. My journey with Endometriosis has been a long and very painful one.

During the latter half of my teens I started having severe pains, heavy bleeding, bloating, lower back pain and constipation during my menstrual cycle. The pain was so intense I would sometimes faint.

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Guyana : Endometriosis Care & Treatment

map of guyana

**Updated 10/29/16: If you live in Guyana and have (or think you have) Endometriosis, there IS an online support group created by a woman living in Georgetown:  **

Guyana is a small English-speaking country located on the northeastern coast of South America, next to Venezuela and Brazil.  For a size-comparison, it’s slightly smaller than the state of Idaho.  It’s estimated that 736,000 people live in Guyana, most of whom reside in or near the capital, Georgetown, .  The majority of the country is covered in dense tropical forests.  The rest is grasslands, marshes, and cultivated urban areas.  Guyana has an 11% unemployment rate, and 35% of the population lives below the poverty line.   Unfortunately, nearly 155,000 residents live without electricity.

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